I am a heart mum to William who is 5 years old. He was born with Pulmonary Atresia, major, VSD and MAPCAs. So far he has had two major heart surgeries along with many other procedures. He will also need to have further major surgeries as he grows to replace a valved conduit that has been placed in his heart that will not grow with him. Currently the vessels that supply his lungs are too small and the cardiologists are working out the best way to fix this issue. Otherwise he is growing and developing well and seems to be a healthy young man. We are very proud of our CHD warrior.

Thanks for sharing William's story Joanne. I would be proud if I were you, too. What a fighter!

Hello,

I am a heart mom to a beautiful CHD warrior, my son Kaleb.  He is now 22 months but was born with PDA, a very large PDA that his first pediatrician did not catch. It wasnt found til he was 9 months old. His new pedi heard a prounounced murmur and immediately scheduled Kaleb to see our wonderful pediatric cardiologist. To prevent open heart surgery he was monitored and surgery was scheduled for 13 month when his veins were large enough to use a cath procedure.  He pulled through like a the fighter he is and has an amplantzer device forever in his heart. He is healthy and so happy, well hes always been happy. I am frustrated because when Kaleb stopped growing at 5 months old his doc did nothing, nothing at all she jus blamed acid reflux. my son could have lost his life. I am reminded every moment how lucky I am that some doctors are educated about CHF and his new pediatrician is and saved his life. I am so lucky to be his mother, so lucky to have every day with him. I want  the world to become more aware of CHF signs and what to do if you notice signs and symptoms. No one should have to discover CHF the way Kristine did! Much love,

Tess

My daughter Kathryn was born with TGA and VSD. I was really lucky that she was diagnosed after only 5 hours of being born. She was air vacd to Phoenix Children's Hospital where she had her first sugrery at a week old. She was doing really good afterwards and was scheduled to come home. The night before she came home she crashed, died from 7 to 9 minutes. They were able to save her but told me she would be brain dead. She was a fighter, a very strong fighter. She was able to get well after 5 weeks she was sent home to get bigger for her next surgery. Aug 29, 2000, I remember that day well....we didnt know what surgrey we were going into. They wanted to put a band so she could get stronger and bigger before they made that switch. They didnt know how bad it was, they had no choice but to do the full switch. It was supposed to be a 4 to 5 hr operation. 7am it started, she didnt get into her room until right before 12 am. 15 hrs they worked on her and she had less than 5% to live. She came back on echmo, its the most horrible thing I think I have every seen.To this day I can still hear it and that day haunts me like it was yesterday. But I'm lucky, my daughter is turning 10 next month. She was given less than a 5% chance to live, and after a year they said she would be lucky to live past 7. The worst thing out of the entire experience is that I didnt even know babies could be born with "broken" hearts. The awareness isnt there unless you have lived thru it or known someone that has.

I am Heart Mama to Owain. My Heart Hero has double inlet, single ventricle with pulmonary atresia. He has had 2 out of 3 surgeries to repair his heart. The BT Shunt at 9 days old and the Glenn at 5 months.

My son is treated at UVa Children's hospital and I am a co-coordinator for Mended Little Hearts of Charlottesville. If any one is in the area, we would love to have you join our group. We meet once a month for support as well as social gatherings.

Hi. I am heart mom to Riley born Dec.30, 2008. I was "lucky" that she was born blue and not moving. I had no idea what a CHD was until the doctor came in and told me she had TGA. She had a procedure at 8 hours old to keep her hole in her heart open until her open heart surgery which she had at 5 days old. I cherish each day and will forever support any CHD child, angel, or parent.  The CHD family is amazing yet I cry a lot. Tears that I have Riley and tears that another child got their wings.  If you ever want to meet a true hero, find a CHD child or a mom of a CHD angel. I kow that her journey has just begun but I have faith that God knows what he is doing, Riley is God's angel on earth. She is my hero.

Don't forget about the Adult CHD Warriors/Survivors!

My name is Lauren and I'm a 22yr. old CHD Survivor. I was born a healthy baby girl or so they thought. At a few weeks old I started to get strange symptoms like a rash all over my body, throwing up everything I ate, sleeping tons, etc. My mom took me to the Peds office six weeks in a row and they told her that I was fine. At 11wks old I started breathing very heavy, so my mom rushed me to an ER where they found I was in severe heart failure and dying. I was rushed to a Children's Hospital were I was diagnosised with Tricuspid Atresia, HRHS. I had an emergency heart cath the next day after diagnosis. I had my Pulmonary Artery Banding at 6months and my Fontan at alittle over 2yrs. old.

I'm doing realitively well right now and in my last year in College. I'm getting a Psychology degree. I'm actively involved in CHD organizations and the online CHD Community. I want to make a difference in the world. I will never stop sharing my story and spreading CHD Awareness!

There is SO much more to my story, this was the very basics. Go to my blog: www.laurensheart.blogspot.com if you want to read more.

Growing up with a CHD hasn't been easy, but my mended heart has been a big blessing!

CHD parents: No matter how long your CHDers is here on earth, they are special and their heart story inspires! All CHDers keep me going! Remember to give them the most "normal" life you can give them while they are here. My parents did and I will forever be grateful for that!

Heart Hugs to all! Baby Cora was and still is one amazing little girl bringing the CHD community together and saving lives!

With LOTS of Hope, Love, and Faith,

Lauren

Yay Lauren, thanks for sharing your story!! Of course we would never forget about the adult CHD Heroes! You are our inspiration ;)

Thank you all for sharing your stories. I knew some of you, met some of you. And, might have met some of you before. I think as heart parents, and CHD warriors, that's one of the best things we can do to get through all of this, keep telling out stories.

And Lauren, you have no clue how inspiring you are to so many! You are a beautiful woman and every time I see your picture, I think about how much hope there is in the midst of all of the sadness. <3

Great to 'meet' everyone! Of course I already know Lauren; I love reading updates on your blog, and I have been following Cora's story from almost the beginning. Kristine, I wish I had even half the strength and courage you have.

My heart child is my three year old son, Bilal. He was diagnosed after birth with Tetralogy of Fallot, and we were expecting that he would need surgery for repair at 4-6 months of age. But as you learn once you become a heart parent, things don't always happen as predicted. He started developing signs of congestive heart failure and his growth rate slowed down within the first several weeks of life. So a decision was made to perform surgery earlier. He was 8 weeks old and not quite 9 pounds when he had open heart surgery. Fortunately his anatomy and the expertise of his surgeon made it possible for him to have his full repair. So now, although his heart is not fixed, it is repaired. His cardiologist anticipates that he will most likely need a pulmonary valve replacement as an adult. But we are hoping and praying that by then he may be able to undergo a transcatheter procedure, and possibly not need another open heart surgery.

Right now Bilal is a thriving, very active little boy, who is as energetic as any heart healthy child. Last year his cardiologist cleared him to come back every 18-24 months for follow up appointments, since he is doing so well.

I have a blog where I share what is going on in our crazy busy lives, and whenever possible I share some CHD info and stories. If you are interested you can check out the link here. I love to connect with other heart families.